domenica 17 novembre 2013

Letter to Pope Francesco.

Dear Pope Francesco, the author of this letter is not the father of the child whom, ignoring protocol once more, you asked 80.000 worshippers to say a Hail Mary for. I’m just a 54-year-old man, who’s been fighting for 5 years against the most terrible disease ever: ALS. It’s terrible because it only attacks muscles, while the mind can observe the degradation of the body, day by day. I confess I’ve never been a regular churchgoer, but since the disease I’ve been thinking more about God and Christ. And then you came. And it was love at first sight. I loved you immediately because I recognized one of us in you; I love you for your being “normal”, for the Jesuit rigour you used to bring the Church closer to us sceptics, accustomed to considering it a distant institution. With that prayer of 80.000 voices you gave new faith to the many thousand people (yes, unluckily we are that many), very sick people whom the italian state (please forgive me for using lower case letters) deprived, cruelly and seemingly without a valid reason, of the only hope that science and research had given them: stem cells with the Stamina method. I don’t feel like fueling arguments with the minister Lorenzin and her ten “experts”, and I believe you feel the same way, but the improvements of the patients treated with the Stamina method appear evident to all who “wanted” to see them… At the same time, the clinical trial of the Revert group, that as you must know is headed by monsignor Vincenzo Paglia, bishop of Terni, treating only six patients – and I repeat, SIX people only – is allowed to continue its activity. Now I’m asking you: why this difference? Is there a good Church and a bad laity? Should I suggest Stamina group to appoint Brescia’s bishop, monsignor Monari, as its president to obtain the same right? You’re right, I had told you I didn’t want to raise arguments, and look what I’m doing… But please try to understand me: when somebody deprives us patients of hope, which is to us as important as treatments, or even more, we feel like we’re dying… a deadline which isn’t very far away for me, and for many others like me… I turned to you like I’d have done with a friend, because I see you as such. An older friend whom I can ask advice to, knowing he will give me the wisest advice with joy, with no other interests in mind than the pleasure of helping others. Isn’t that what Gospel is about? One last thought: you’re the most powerful man on Earth, but still you allow me to get in touch with you just writing with my eyes… This is a small miracle you’ve already done, but it’s huge for me. This is the second miracle: you’ll answer me, promising you’ll give us the right to decide whether or not we want to use stem cells to treat our diseases. I know, deep inside, that this letter isn’t for me, but the idea of being able to help many people in the same condition makes less sad what I like to call “the end of my life”. And I know I won’t be alone up there: my dad will be there to wait for me, finally proud of me. With love and respect, Marco Sguaitzer. P.S. Arianna, Maddalena and Stellina, the tireless moms and translators of my blog, one day will be happy and proud to tell their children that such a translation had helped pope Francesco to reach a good and important decision. And Aiste, my wonderful partner who has shared every second of my battle, our battle, actually, will accept to marry me, I believe, in our little house full of light, if my new “older friend” was to celebrate the wedding. Are these only dreams? Probably. But please, for the love of God, leave me at least my dreams.

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